Within this assignment the writer aims to identify and explore in depth the role development of the specialist palliative care nurses in the community setting, and in particular how their role has evolved over the last 5 years. The writer aims for the first part of the assignment to provide the reader with a brief background into the development of palliative care and a history of how the traditional role of a palliative care nurse has expanded from a more generalist perspective to that of a position of specialism.
The writer will highlight the essential skills and qualities deemed crucial from a professional perspective in implementing such an expanded nursing role, with particular attention focusing on the impact this role development has made to patient centred care. The writer will highlight the importance of inter-professional working in palliative care, and provide evidence of how the government priorities have changed the boundaries of palliative care and how this has impacted on provision of palliative care services.
The second half of the assignment aims to show analysis of both the role development of community specialist palliative care nurses and the recent changes, and provide evidence of how this role has impacted on society. The writer will aim to show evidence of how the role has been successful by providing patients perspectives of the service, and more importantly what improvements could be made in order to ensure the safety of positions with the introduction of the new commissioning process being implemented.
The World Health Organisation (2009) defines palliative care as supporting patients and their families with physical, psychological, social and spiritual aspects of care during a physically and emotionally difficult journey of living with a non-curative condition. People’s awareness of palliative care has been linked to the rise of the modern hospice movement back in 1967, when a doctor by the name of Dame Cicely Saunders was responsible for opening a hospice in London called St Christopher’s.
Cicely voiced concerns about the way death was dealt with in hospitals around this time and focused her attention on approaching death of cancer patients with more dignity and humanity (Kearney and Richardson 2006). Cicely went on to write several articles for nursing journals and her work was thought to be key to the development of the role of the clinical specialist palliative care nurse (Payne 2008). In the 1970’s the first Macmillan nurses were introduced. Macmillan nurses were generally employed by the National Health Service owever their posts were funded by Macmillan cancer support. The charitable service provider offered local health authorities the opportunity to enrol on a programme that would fund a Macmillan nursing post for a period of 3 years. Once the 3 year period ceased the health authority would become solely responsible for continuing the service out of their budgets (Lugton and Mcintyre 2005). Primarily the role of the Macmillan nurse back in the 1970’s was to provide direct hands-on care for patients whose illness had progressed to the terminal stage as well as support for their families.
The role of the Macmillan nurses today tends to focus on meeting the specialist palliative care needs of patients. They provide support with how to manage difficult symptoms associated with the illness and various pain control methods as well as advice on numerous other things, as opposed to the general palliative care in the form of hands on nursing care. This type of palliative care is provided by generalist nurses within the community, such as district and community nurses.
Their caseload not only consists of patients requiring palliative care but patients with various other nursing needs. Not all specialist palliative care nurses have the title Macmillan nurse, only those whose post were initially funded by Macmillan Cancer Support and then the NHS. Macmillan nurses are registered nurses who have at least 5 years experience in nursing. In addition they have experience in cancer or palliative care and further to their general nurse training have completed specialist courses, which enable them to have the title specialist nurse (Macmillan Cancer Support 2010).
The work carried out by both Macmillan nurses and clinical specialist palliative care nurses differ only slightly, regardless of where they work (Cambridge University Hospitals NHS 2007). According to Seymour et al (2002) the role of the Macmillan nurse has evolved to that of the clinical nurse specialist. A clinical nurse specialist was defined by The Royal College of Nursing in 1988 as having gained through further training an advanced expertise and knowledge in a particular branch of nursing care.
They further clarified the role as having responsibility for clinical practice, education, management and having knowledge of relevant research on their specialist area of nursing (Newbury et al 2008). Palliative care patient’s medical needs can change rapidly and may require the expertise of specialist palliative care nurses. Unlike generalist nurses, specialist palliative care nurse’s sole priorities lie with patients with palliative care needs. Referrals to specialist nurses are made when the needs of palliative care patients are becoming more complex and their symptoms harder to manage (Buckley 2008).
However a review carried out by Ahmed (2004) suggests that there is lack of understanding of when and to whom referrals should be made to making them inconsistent. This lack of knowledge could be a barrier to the specialist palliative care nurses success. Another view could be that generalist nurses have been providing palliative care for many years, so why should they feel they need to hand over the care of the patients? The Royal College of Nursing (2002) outlined essential skills that were thought to be necessary to the role of specialist palliative care nurses.
These were effective communication and the ability to deal with people’s grief, loss and bereavement. Lugton and Mcintyre (2005) suggest that communication is the key attribute to the role of the specialist palliative care nurse however Penson (2000) argues that comfort is the key attribute. Community specialist palliative care nurses are just one group of professionals that make up the multi-disciplinary team providing patients with palliative care. Their work involves close contact and communication with patient’s general practitioners, district and community nurses as well as community matrons.
Community matrons are a relatively new role development. They were introduced in 2006 and the role was thought to be developed as a result of the population of the United Kingdom living longer and living with long term conditions. Their work involves looking at the patient holistically and supporting them whilst addressing the complex needs associated with their long term condition. (Sines et al 2009). Supporting patients to manage their symptoms and aiding them to live independently was one of the main proposals set out in the National Service Framework for long term conditions (Department of Health 2005).
Prior to the introduction of community specialist palliative care nurses palliative care for the past 150 years or more was provided by district and community nurses in the home environment (Pellett 2009). According to Meehan (2010) within the United Kingdom numbers of qualified district nurses working in the community has fallen dramatically. This questions whether the introduction of the specialist nurses such as community specialist palliative care nurses and community matrons has contributed to these numbers falling. With shortages of district nurses patients care will be impacted upon.
Terminally ill patients who have agreed their preferred place of care may have this taken away if problems arise in their condition and they eventually end up having to be admitted to the hospital or hospice unnecessarily (National Audit Office 2008). This in turn will have an impact on the current trends at the heart of the government’s priorities which following the NHS next stage review looked at increasing areas of healthcare into the community and reducing hospital admissions in an attempt to cut NHS costs (Darzi 2008). When the government announced their financial cuts to the NHS back in 2007 specialist nurse posts came under attack.
Specialist services as opposed to generalist services are expensive and specialist nurses are in a higher pay band making them more vulnerable to losing their positions in spending cuts (Dean 2010). This questions the government’s views on specialist nurses. Are they seen as additional extras that could cut back in future spending cuts, in turn having an effect on patient care? Although the role of the specialist palliative care nurse is not a recent development to community nursing their role has changed over the last five years.
This is in response to the needs of the population and government priorities. Demographic changes are a feature that have impacted on the work of the community specialist palliative care nurse. According to Sines et al (2009) the United Kingdom’s population is set to increase by 7. 2% by the year 2016. The central reasons for this increase are due to the fact that individuals are living longer and migration. Gomes and Higginson (2008) suggest that by the year 2030, 22% of the United Kingdom and Wales will be aged 65 years and over, with two thirds of people being over 75 years old when they die.
Older age inevitably increases the certainty that people are more likely to suffer from non communicable diseases as well as cancers and the presence of co-morbidities (Payne 2008). The needs of the aging population will mean that community specialist palliative care nurses will be called upon to deal with increasing demand on palliative care services. As well as the population of the United Kingdom increasing so has patient’s expectations of the NHS, health and social care due to the input from the media.
The introduction of the white paper: Our Health, Our care, Our say: a new direction for community services (2006) set out by the Department of Health was thought to be responsible for these expectations. People up and down the country were asked what they liked and wanted from their local health and social care services. People responded with enthusiasm and the government listened and promised to give the public more choices, providing better information about their health and how to stay healthy.
The paper gave people more power and influence over the type and recommended standard of service they were to be offered locally. People expect to be treated more as partners and equals and expect choices and options available to them (Department of Health 2006). The provision of palliative care has also changed, historically provision of palliative care focused on supporting patients with cancer however over the last few years moves have taken place to expand the scope of specialist palliative care in order to attend to needs of patients with non-malignant diseases (Small et al 2000).
In 1997 the department of health released a white paper: The New NHS: Modern and Dependable which suggested that the Calman-Hine Report: A policy Framework for Commissioning Cancer Services (1995), which examined and proposed a restructuring to cancer services in the United Kingdom could extend its services even further to include people with non-malignant diseases (Department of Health 1997).
Amongst the Calman-Hine report were recommendations that everyone with cancer should have equal access to high levels of expertise regardless of where they reside in the country, and a distinction between palliative and terminal care meaning that patients have access to services earlier on in their illness (Calman & Hine 1995). Expanding specialist palliative care to patients with non-malignant diseases has had a significant impact on the work load of specialist palliative care services by stretching resources to the limit.
Although emphasis has been on providing all patients with life limiting diseases palliative care, is this actually being done? According to Watson et al (2005) specialist palliative care services are not readily available to patients with non-malignant diseases as they are to cancer patients. There is also a lack of support for patients from the voluntary services such as Marie Curie. In order to assist nurses to deliver evidence based practise initiatives such as care pathways were developed.
These developments were put in place following the introduction of the white paper: A First Class Service-Quality in the new NHS back in 1998. The white paper was proposed by the government and aimed at producing a strategy to improve the delivery of health care. Three national initiatives which are important parts to the palliative care approach are the Gold Standard Framework, Preferred Place of Care document and the Liverpool Care Pathway. The Gold Standard Framework is a programme of assessment and care. Its aims are to improve quality of life for both patients and their families in the last year of a patient’s life.
The Liverpool Care Pathway was developed 10 years ago and is a tool to assist health care professionals care for those who are in their last few days of living. The third initiative preferred place of care document is aimed at putting the patient at the centre of care, giving patients the choice regarding where they would like to be cared for and where they choose to die (Ellershaw & Wilkinson 2003). The preferred place of care document is important to the changing role of the community specialist palliative care nurse.
The End of Life Strategy for England delivered by the Department of Health (2008) set out a comprehensive plan to improve end of life care for all dying people. This is the first strategy that does not solely concentrate on improving end of life care for people with cancer. Following on from the government’s proposals in 2003 one of the key components of the strategy is giving people the choice about where they choose to die. Given the choice many people would prefer to die in their own homes with adequate support from professionals, however this is not always possible (Thomas 2004).
At the beginning of the 20th century the majority of people who were terminally ill died in their own homes whereas today statistics show that 66% of people die in hospitals and 19% at home (Ellershaw & Wilkinson 2003). Some of the reasons why this is not possible are due to inadequate symptom control, which is an important role of the community specialist palliative care nurses. Community specialist palliative care nurses generally work normal working hours so what provision is there for patients outside of these hours and who covers the work of the nurses when their working day is complete?
Palliative patient’s complex needs require swift responses from palliative specialists when it comes to out of hours services. If patients were receiving 24 hour care unnecessary emergency hospital admissions and suffering of patients would be reduced. A number of community specialist palliative care nurses within certain trusts have gone onto complete nurse prescribing courses. They have the ability to prescribe from the extended formulary making them independent prescribers. For specialist nurses’ having this expanded nursing skill means they have the opportunity to work more autonomously.
As one of the key roles of the community specialist palliative care nurse is managing difficult symptoms having the ability to prescribe immediately and appropriately helps promote a service that will reduce patients and carers distress (Mula and Ware 2003). This further acknowledges the importance of specialist nurses working out of normal working hours. The National Institute for Clinical Excellence (2004) suggests that in order to provide good end of life care patients need to have access to specialist palliative care 24 hours a day, 7 days a week.
However a report by the National Audit office (2008) reported that just over half of local health authorities provided such care. The last government promised that all cancer patients would have access to specialist nurses trained in their condition (Rose 2010) however generally this too is only available during normal working hours according to Macmillan Cancer Support (2010) meaning that it is then acceptable for such care to be provided by generalist nurses.